An excerpt from Catastrophic Rupture: A Memoir of Healing.

The spark just scarcely lit in Jo had vanished; I had seen no sign of awareness since the spasms began the night before. Having just edged over the threshold into what I considered a reasonable quality of life, with Josephine able to interact in a positive (though limited) way, the thought of losing that was crushing.

The hospital stay was efficient. The diagnosis was confirmed, and the treatment, consisting of intramuscular hormone (ACTH) injections administered daily for the next eight weeks, began that day. It stopped the spasms—we saw none after the first shot—but it did nothing to bring the brightness back to Jo’s eyes. When we were discharged home a couple of days later, having been taught how to give the injections and set up with our supplies, we carried with us a daughter who, though spasm-free, was nonetheless lost to us.

The darkest days were still to come.

***

Josephine had become a zombie child who did nothing but arch, cry, and spew partially digested milk from her mouth. She barely acknowledged us. She rarely smiled. She didn’t focus or reach for things. The little person we had seen blossoming just days ago was gone.

One evening, while Jason was at work and Oliver was sleeping, I heard through the baby monitor the unmistakably wet sound of vomiting. I rushed upstairs to find Josephine stiff and screaming, her face, clothes, and crib sheet sopping with warm, pink, phenobarbital-tinted milk. After cleaning her off and changing her clothes and the bed sheet, I placed her thrashing body back in the fresh crib and tried to settle her. My quiet murmurs went unheard, drowned out by her harsh, guttural breathing. My soft pats to her back and bottom were lost in the frenetic churning of her arms and legs. Abandoning this approach, I scooped her up and wrestled her to the padded glider rocker across the room.

This rocker had a great track record. Oliver and I had spent many hours nestled together in it during his tenure in this room. It was our spot for feeding, reading books, and snuggling. He had not been a particularly fussy baby, but on the occasions when he needed soothing, a few minutes of back-and-forth in the glider was enough to calm him. As I sat down with Josephine, my body recalled the sensation of Oliver’s warm heaviness as he had melted into me, his sobs shifting to slow, quiet breaths. Josephine’s life and routine were so different from Oliver’s that we hadn’t had much cause to use the rocker with her. Perhaps tonight we would find that it was just what she needed.

Well, that thought turned out to be ridiculous. Jo’s back and neck were so arched into a backward “C” shape that I couldn’t even cradle her in my arms. I resorted to placing her awkwardly across my lap, her body contacting mine only with the top of her head and the backs of her calves. Her arms windmilled furiously, precluding any attempt at snuggling. Steadying her with a hand on her chest, I began to rock.

Gently, at first, we moved forward and back, forward and back. Still she rasped and flailed and stiffened. Her eyes stared unseeingly, turned upward in her head. Desperate to break through to her, I progressed to more vigorous rocking. Maybe I could startle her into responsiveness, or at least momentarily break her pattern of arching and thrashing. But my efforts were futile. She remained unaware, untouchable, inconsolable. The daughter I had known wasn’t in there, and I couldn’t connect with whatever it was that remained.

As I looked at her, I was struck with feelings of revulsion. What is this thing? I questioned in dismay. Although the form was that of a human, what lay across my lap could hardly be recognized as a person. Is this what we are left with now? This unreachable, miserable being? The idea was utterly appalling. Unable to mother this creature, and worse, not certain I even wanted to, I wept.

***

In the months just prior to the infantile spasms, as Josephine’s mind had begun to develop and grow, so, finally, had my love for her. My lack of affection for her up until that point had troubled me, and it was with relief that I had realized I was beginning to look at her with adoration—that a random thought of her was accompanied by delight as often as sadness. I knew that my lack of acceptance had been at the root of my difficulty bonding with her, and I had felt that I was beginning to find peace with the person that she was, limitations included.

Looking back, I see that my reaction to her that night in the rocker—my denial of her personhood, my despair at the thought of being obligated to mother her—reveals that what I mistook for love and acceptance was actually something much more tenuous and conditional. I wasn’t truly beginning to love her, I was beginning to love who she might become. It was only her potential I valued, not her current self. The odyssey to fully embracing her, disabilities and all, was one I had yet to make.

K. Jane Lee is a pediatrician and author of Catastrophic Rupture: A Memoir of Healing.

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